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A Whakatāne mum who set up a charity with her husband to
help support whanāu who have a child with cancer has been
awarded a community research grant from the Health Research
Council (HRC) to explore Māori perspectives on bone marrow
donation.
Established in memory of her son Chace, the
Dream Chaser Foundation is a national registered charity
co-led by Keri Topperwien (Ngāti Awa, Ngāti Porou). Chace
(Ngāti Awa, Ngāti Porou, Tūhoe) passed away in 2012 at
just three years of age after a difficult battle with acute
myeloid leukaemia – an aggressive type of cancer of the
blood and bone marrow.
Keri will use her HRC Ngā
Kanohi Kitea Development Grant to build connections and
prepare to undertake kaupapa Māori research that targets
opportunities for increasing the number of bone marrow
donors in Aotearoa, particularly among Māori.
“The
best chance our son Chace had of surviving leukaemia was a
bone marrow transplant to replace the cancerous cells within
his bones with donated healthy marrow,” says
Keri.
“However, unlike with blood, certain markers
need to align to be a bone marrow match, meaning that
Chace’s match was most likely going to be from a Māori
donor. At the time, there were 26 million bone marrow donors
on the international bone marrow registry, however only 6000
were Māori – but none were a match to our
son.”
Keri says this devastating experience is not
unique, but reflects a reality for many Māori, Pacific
Island and other ethnic minority groups searching for a
donor match due to their underrepresentation on the bone
marrow registry.
With the help of her research mentor
Dr Naomi Simmonds (Raukawa, Ngāti Huri), Keri will
undertake a comprehensive literature review of existing
research on organ donation from Te Ao Māori and indigenous
perspectives. This will help support her to develop research
questions for a full project proposal by identifying
barriers that may be impacting on bone marrow statistics and
opportunities to increase the number of bone marrow donors
by reframing how bone marrow is understood from a Te Ao
Māori perspective.
She will also establish a bone
marrow advisory group of health professionals,
organisations, relevant charities and whānau to share
knowledge and experiences of the bone marrow donation
process.
Keri hopes to build on existing Māori
research on organ donation and believes exploring the
process of bone marrow donation offers rich insights into
whakapapa, whānau, spirituality and connection that
distinguishes itself from the wider kaupapa of organ
donation.
“While the sentiment of the ‘gift of
life’ is often associated with the act of donation, the
unique genetic element between the bone marrow donor and
recipient weaves together the past, present and future in a
way that centres Māori identity, health and wellbeing,”
she says.
“For every Māori child that finds a bone
marrow donor match, there is a possible overlap somewhere,
as ancient as it may be, of genealogy. That’s a powerful
narrative for talking to Māori whānau who may have
reservations about bone marrow donation.”
Keri says
that although this research has bone marrow donation at its
core, there is the opportunity for multiple
offshoots.
“Once you start talking about bone marrow
donation, it often leads to discussions about cancer
inequities, blood donations or becoming an organ donor.
These are not easily accessible conversations; they must be
supported in the right context because there’s a
sacredness to these topics. When considered through the lens
of cultural values such as whakapapa, manaakitanga, mana and
mauri, it can shift the kōrero from one that has been
heavily medicalised by western frameworks to one that
enables Māori-led health solutions,” says Keri.
HRC
Manager of Māori Health Research, Le-Shan Pomana-Wesley
(Ngāti Kahungungu ki te Wairoa) says she is delighted with
the response to this year’s revamped Ngā Kanohi Kitea
Community Advancement Fund, which has seen more than $1.7
million awarded to 12 recipients, with further recipients
likely to be announced in early 2023. Many of these
recipients are from Māori community, iwi, hapū or similar
organisations that have not received HRC funding before,
including Keri Topperwien from the Dream Chaser
Foundation.
“Our Ngā Kanohi Kitea Community
Advancement Fund is an opportunity for iwi, hapū, other
Māori organisations, and Māori researchers or research
teams to undertake self-identified health research that can
make a direct and significant difference to the health and
wellbeing of their communities,” says Ms
Pomana-Wesley.
“This year’s grants cover a wide
range of areas, including research into the front-line
responses of marae to the COVID-19 pandemic, tikanga-led
approaches to supporting individuals with brain injuries and
disabilities and their whānau, and developing new
approaches to delivering primary care to create more
responsive and culturally safe systems for
Māori.”
See below for the full list of 2022 Ngā
Kanohi Kitea Community Advancement Fund recipients. To read
lay summaries about any of these research proposals, go to
hrc.govt.nz/resources/research-repository and filter by
proposal type (e.g. ‘Ngā Kanohi Kitea Development
Grant’) and year ‘2022’.
2022 Ngā Kanohi Kitea
Community Advancement Fund recipients
Ngā
Kanohi Kitea Development Grant
Dr Ainsleigh
Cribb-Su’a, National Hauora
Coalition
Validation of tools to measure experience
of whanau engagement
12 Months, $
88,400
Ms Cheryl Davies, Tu Kotahi
Māori Asthma Trust
Te Pae Tawhiti: Looking at the lie
of the land
12 months, $99,635
Ms Tiana
Mihaere, Independent researcher
Maramataka:
The rising of ancestral waters
4 months,
$47,310
Ms Keri Topperwien, Dream
Chaser Foundation – A Chace Topperwien Charity
The
gift of life – exploring Māori perspectives on bone marrow
donation
8 months, $53,650
Dr Dianne
Wepa, Auckland University of
Technology
Kaumātua use of digital technology post
COVID-19 to meet their health needs
12 months,
$98,133
Ngā Kanohi Kitea Project
Grant
Lily George, Waikare Community
Development & Research Trust
Pona Kakā: A
holistic approach to arthritis intervention
18
months, $297,782
Ms Rangi Pouwhare,
Mana Ātea
“Te Mana o Taku Reo – Power of my
voice“
18 months, $300,000
Ms Gina
Waters, Mātai Medical Research Institute
The
role of motor fidgeting on executive functioning in
ADHD
24 months, $299,960
Ngā Kanohi Kitea
Training Grant
Dr Stephanie Palmer,
Te Whariki Manawahine o Hauraki
Te Whariki Manawāhine
o Hauraki Mahi Raraunga
12 months,
$127,245
Ngā Kanohi Kitea Knowledge Mobilisation
Grant
Mr Levi Armstrong, The Meke
Meter
Mobilising a Māori community
12 months,
$92,900
Dr Nina Scott, Hei Āhuru
Mōwai Māori Cancer Leadership
Mātahia mai I te 50,
kei tūreiti. The pathway for indigenous advocacy
12
months, $99,656
Mrs Chrissie Cowan,
Independent researcher
Ahakoa kahore mātou i te kite kei
te kite (We may be blind but we have vision)
12 months,
$99,250
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